Abnormal CA19-9 Levels: Next Steps for Patients - Gastroenterology and Hepatology

Abnormal CA 19-9 levels, inquiry about follow-up consultation methods?

Hello Doctor,
About three weeks ago, I went to the hospital for a self-paid health checkup.
Due to my menstrual period, I first underwent abdominal/pelvic/breast ultrasound, and a week later, I completed blood, urine, and stool tests.
During the ultrasound, multiple cysts were found in my breasts (there is a family history), so I immediately went to the breast surgery department for further examination (biopsy) the next day.
Eight days after the biopsy, I went for blood tests, and although the hospital has not yet sent out the complete report, I was informed that my CA19-9 level is abnormal and significantly elevated (in the hundreds), so they recommended that I consult a hepatobiliary and gastroenterology specialist.

As I am currently studying abroad and will be leaving Taiwan in two days, I am unsure how to proceed appropriately.
Online information suggests retesting or monitoring CA19-9 levels over several months; however, my breast is still swollen from the biopsy (it has been confirmed to be benign, with one being a fibrocystic lesion and two being diffuse glandular tissue), so I believe this approach may not be suitable before I leave the country.

Could you please advise whether I should wait for the complete report (and for the breast swelling to subside) before seeking help from a doctor abroad for the CA19-9 lab test, or would you recommend that I undergo other tests immediately? (The self-paid health checkup included an ultrasound, which indicated mild fatty liver; I am currently unaware of any issues with other organs.)
Note: There is a family history of liver cancer, but no history of stomach, pancreatic, or colorectal cancer.

Thank you, Doctor.

Shu, 30~39 year old female. Ask Date: 2023/09/11

Dr. Chen Shidian reply Gastroenterology and Hepatology

CA 19-9 cannot be used for diagnosis due to a very high rate of false positives; its interpretation depends on the individual physician's perspective.
The principle is that if there are no specific tumors found during health screenings, one can feel reassured.
It would be advisable to have it rechecked during the next visit to Taiwan.

Reply Date: 2023/09/11

More Info

Understanding abnormal CA19-9 levels can be quite challenging, especially when navigating the complexities of medical evaluations and potential implications for health. CA19-9 is a tumor marker primarily associated with pancreatic cancer, but it is important to note that elevated levels can also be seen in various benign conditions, such as pancreatitis, cholangitis, and liver diseases, including fatty liver disease.
In your case, the significant elevation of CA19-9 levels, especially in the context of your recent health checks and family history of liver cancer, warrants careful consideration. However, it is crucial to understand that CA19-9 is not a definitive diagnostic tool for cancer. The specificity and sensitivity of CA19-9 are relatively low, meaning that many factors can influence its levels, leading to false positives. This is particularly relevant given your recent breast ultrasound findings, which indicated benign cysts.

Given your situation, here are some recommended steps:
1. Wait for Complete Reports: It may be prudent to wait for the complete pathology report from your breast biopsy before taking further action regarding the CA19-9 levels. The inflammation and changes in your breast tissue could potentially influence your CA19-9 levels, and once the swelling subsides, a more accurate assessment can be made.

2. Consult with Specialists: Since you are advised to see a gastroenterologist, it would be beneficial to schedule an appointment as soon as possible. They can provide a comprehensive evaluation of your CA19-9 levels in conjunction with your medical history and any imaging studies. Given your family history of liver cancer, they may recommend further imaging studies, such as an abdominal ultrasound or CT scan, to assess your liver and other abdominal organs.

3. Consider Follow-Up Testing: If your CA19-9 levels remain elevated after the swelling from the breast biopsy has resolved, your doctor may recommend follow-up testing. This could include repeat CA19-9 tests over a few months to monitor trends in your levels. A consistent elevation or a significant increase could prompt further investigation.

4. Monitor Symptoms: Pay attention to any new symptoms that may arise, such as unexplained weight loss, jaundice, abdominal pain, or changes in bowel habits. These symptoms could provide additional context for your healthcare provider in assessing your condition.

5. Lifestyle Considerations: Since you mentioned having mild fatty liver, it may be beneficial to adopt lifestyle changes that support liver health, such as maintaining a balanced diet, engaging in regular physical activity, and avoiding alcohol. These changes can help mitigate any potential liver-related issues.

6. Seek Local Medical Advice: If you are leaving Taiwan soon, it is advisable to find a healthcare provider in your current location who can continue to monitor your CA19-9 levels and overall health. Ensure that you have all necessary medical records and test results to share with your new healthcare provider.

In summary, while elevated CA19-9 levels can be concerning, they are not definitive for cancer diagnosis. It is essential to approach this situation with a comprehensive plan that includes waiting for complete reports, consulting with specialists, and monitoring your health closely. Your proactive approach to your health is commendable, and with the right guidance, you can navigate this situation effectively.

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